Wednesday, February 16, 2011

Thank You!

Thanks to your votes, Wheelchair Kamikaze has won medGadget.com's 2010 Best Patient Blog award (click here). WK also won the award in 2009, which proves one thing beyond any doubt: medGadget must have some kind of serious worm or virus infecting their vote counting computers.

All jokes aside, I am extremely grateful for the support readers have given this blog, not only by voting for it in the medGadget contest, but by commenting on the observations and information I post, introducing the blog to friends and family, and reaching out to me through e-mail. I'm genuinely sorry if it sometimes takes me a while to return those e-mails or to follow-up on the comments left on my posts, but do know that I read each and every one, and try my best to keep current with my correspondence. Unfortunately, the realities of having MS sometimes conspire to keep me less productive than I'd like to be.

While I am extremely proud to have won the medGadget award, the blog that took second place,"Brass and Ivory" (click here), and the person who writes it, Lisa Emrich, are equally deserving of accolades. Lisa is a fellow MS patient who has long championed the cause of MS patient activism, and has been a driving force in creating a cohesive community of Multiple Sclerosis bloggers. While I believe it speaks to the quality of both blogs, in a way it's unfortunate that two MS blogs were nominated for the award, for as a patient population, we need to speak in one voice, demanding something far better than the status quo when it comes to the research and treatment of MS. Blogs like Wheelchair Kamikaze and Brass and Ivory should not be perceived as being in competition with one another, but as complementing each other in the mutual fight against MS and an MS establishment that at times appears far too willing to settle for a paradigm in which treatment is good enough.

The clout of the Internet has forced some fundamental changes upon the doctor-patient relationship, as technology has allowed patients access to information that had, until recently, been held strictly in the province of medical professionals. A multitude of blogs and forums have allowed MS patients to educate themselves and each other, to share experiences and opinions that have enabled the MS population to become a powerful force for the advocacy of new and better treatment options, and to intelligently participate in treatment choices that had in the past been made for them.

As the controversy surrounding CCSVI illustrates, the voice of patients can no longer be ignored. When the MS establishment tried to dismiss CCSVI outright, a virtual patient revolt made that same establishment not only take notice but take action, in the form of serious scientific trials designed to investigate Dr. Zamboni's theory. Although these trials might not be to the exact specifications that patients desired, valuable information will be gleaned from them. Furthermore, the force of patient momentum has set into motion events that have led to increasing treatment options and the interest of scientists worldwide. We will get our answers soon enough.

At the very least, patient outcry has forced medicine to look beyond the autoimmune theory and the hideously expensive drugs designed to address it (and, more to the point, to reap tremendous profit for those who manufacture them), and to, perhaps for the first time in decades, scrutinize Multiple Sclerosis with fresh eyes. While the current crop of drugs can improve the quality of life for a portion of the MS population, they do nothing to address the underlying cause of the disease, and it should now be clear to MS researchers and physicians that this is simply not sufficient.

As patients, we must demand that research into the true cause of the disease, research that could eventually lead to a cure, be undertaken with all haste and vigor, corporate profits be damned. We are thankful for the imperfect relief that medical science has thus far brought to some of our MS brothers and sisters, but relief falls far short of the goal. In one voice, MS patients must stand up and shout, "Enough! Treatment is not an endpoint; we will accept nothing short of a cure!"

And when that cure is finally found, MS blogs, forums, and patients alike will be able to hail the greatest victory of all, a victory in which we all will have proudly participated.

I forgot to say that although I just landed on your blog quite recently, my first impression and the reason why I saved it in my bookmarks is that your rants, ruminations and reflections seem to me a result of a time-lapse imaging and micro observation of living with MS. I hear a different voice in the choir that can play many chords and help not only people with MS.Thank you.

Congratulations Marc!! Well deserved and so gracious to refer to the second place blog. I will definitely check our Brass and Ivory! My doctor says "knowledge is power" and the more we know about our own health the better off we will be. So the more you and others share information, stories and thoughts then we all benefit. Take care!!

Every time I read your blog, I am amazed not only by your significant contribution to others with MS, but also by your incredible talent as a writer. I am so proud to be your friend and cousin by marriage.Love,Simone

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...